Looking for Taper Schedule...Need Help!!!!!

[Superior Girl]

Hello!

I am considering lowering my dose of opiod pain medication or just maybe going off completely eventually, although I don't know if I'm going to be able to do that because of pain levels. I am on what most people would consider a very high dose of OxyContin, Roxicodone and Actiq and I don't know at what rate I can reduce in order to avoid the majority of the uncomfortable symptoms of withdrawal.

If there is someone around who could advise me, I would be willing to advise of the exact course of what I take each day. I know there used to be a fellow around here named Fred who used to advise on this topic from time to time but I suppose others would have the knowledge to give this advice.

The reason I have not initially given my daily dose is that it seems since a lot of people here don't know me, it just opens a lot of questions about why I take such a high dose, who is prescribing it, etc. I am happy to share the more detailed info on what I take if there is someone who thinks they can help.

I looked up on a different forum page someone else's taper schedule and I'm afraid with my high daily dose and multiple medications and pill strengths, my situation is way more complicated than the young man's (not this forum), who recommended simply stretching out the time between doses and then when that became intolerable, to take smaller doses more often.

I am really afraid of WD and of being in pain again. I know that I could speak with my dr about this and he would be happy to help. He is wonderfully supportive. However, until I am certain that this is a decision I am going to commit to permanently (for more than a few weeks) I just want to see if I can reduce without too much discomfort, WD and pain-wise. My reasons to reduce or stop opiods are complicated and I won't go into them all here but I have been on them since 2001.

So please, if there is someone who can advise me, let me know and I will post my daily dosing schedule and we can go from there.

BTW, how long was BT down? I haven't been by for quite a while! Thank you and I hope everyone is as well as possible!

[brians2000]

Hello I just want to give you support because i dont know of a comfortable taper. I am on Avinza 90mg and withdrawls are worse than the pain. I am sure you take more meds than I do so all I can do is pray for you. I hope Fred comes by soon. Brian

[RustyD]

I found a paper written by several pain docs that stated in their practice they have seen both people need to increase dosages over time, as well as lessen the dosages needed for the same relief. And in many ways it makes sense. Maybe the body heals a little more, or the nerves get less sensitive.

I have requested decreases in the past and never had any problems or judgements made of me. But I have a great doc and a great relationship with him.

Fred is the person who would be able to help most... I can in no way try to estimate titration schedules...

Good Luck to you!!

[Superior Girl]

Thank you both for your thoughts and replies. Hopefully Fred or someone else will come along shortly with additional information....

[Matuboo]

Interestingly, I found that using a little common sense can go a long way when it comes to tapering. There was no schedule available to me when I tapered off a high dose of Oxycodone but was able to get off, in relative comfort by simply spreading out the time between dosages and cutting it down by about 10 percent per week, a little more towards the end. I don't think it's always necessary to follow a "down to the minute" schedule. I remember trying to use one that had me waking up in the middle of the night, being an insomniac anyway it just made things 10 times worse all the way around. Forget that!:rolleyes: I do know that some people don't have the luxery of having enough medication to taper off over a period of time, which is important to avoid bad WD's.

I was really afraid of withdrawals too and you have reason to be, they're nasty! I am trying to recall exactly what it is that I did but since it was a few years ago, it's hard to do. It really wasn't all that crazy though, I think I just reduced my dose by about 10 percent per week, closer to 15 towards the end. Spreading the dosages out was/is key (further and further apart but gradually). Not much help I suppose but just thought I'd offer my success story (without a computerized taper).

If there addiction issues involved, it's a lot different but it doesn't sound that way to me. Anyone who takes these drugs becomes dependent, which some idiots confuse with addiction, huge difference! I was never addicted, just dependent. I am now off Opioids all together because of a drastic reduction in pain levels over the last 2 years or so. Another story all together.

Hope things work out for you and by all means, if you feel more comfortable with a computerized taper (and you can actually locate one) than go for it! Just my exerience. Lots of hugs and good luck!:)

MT

[carolynms]

I just recently got off of my pain meds, didn't taper, and was miserable!!!!!!!!!!!!!!! I did not know tapering was necessary, and, after calling my PCP (who did not perscribe the drugs) did not give me a good taper schedule. Consequently, I went through depression and stomach distress. I was quite pathetic. I lost 10 pounds in 2 weeks, but after I was off the drugs completely for a week, the side effects stopped. I was happy again!! And kept the weight off.
I googled vicodin withdrawal, and found a site that suggested a 10% decrease per week. This reiterates what the last person who posted here has said.
Good luck with this, I really feel for you! I might suggest tapering a little on your own, and seeing if the pain is tolerable, and then continuing from there.
If you are not opposed to it, I also read that Xanax can help with the wd. And, others might critisize, but if you do not take too much xanax, you will not become addicted. Some think you replace one addiction with another, but we are not addicts, we are pain patients that rely on pain meds to manage our lives.
Keep us posted as to how you do, and I will send you good, positive thoughts and cyber ((((((((((((hugs))))))))))))))))).
You will always find support here.
Carolyn

[Matuboo]

Well, I certainly don't claim to be an expert on the matter but I'm not suprised your doctor didn't warn you about the consequences of abruptly stopping prolonged use of Opioids. Most simply do not consider that it is indeed extremely uncomfortable and in some cases dangerous to simply stop taking a powerful narcotic medication. I remember my doctor and pharmacist telling me that it shouldn't be much of a problem and that I might be "slightly uncomfortable" for a few days. Hardly the truth! Fortunately I did a little research and had some experience as I forgot my meds one Xmas vacation and suffered quite a bit as a result, having to make frequent trips to the restroom, sweating and being generally miserable until I was able to get to my meds again.

I think Fred used to recommend a 5 percent taper per week but don't quote me on this, I have not seen him post in a long time. Spreading out the dosages works fairly well and of course, will gradually taper you down, do a little math if you have to.

[Superior Girl]

Thanks MT and Carolyn for your stories and advice. I think I will try to calculate what both a 5% and a 10% reduction would be and see what makes more sense. I don't know how this is going to go because I have already started to take fewer pills and I am already in pain and I have a long, long, way to go! I feel like I have ground glass in my neck.

Carolyn, I'm sorry that no one was there for you to help you with your reduction. I've been in several MVA's and many years ago before I was on the long acting opiods, the drs would give me Vicodin for a period after each MVA. Then after a while, of course they would no longer be comfortable prescribing the medicine, whether or not I was still in pain. I recall one time when I was taking 40 mg per day, 2 qty 5 mg pills every 4 hrs, and I had my prescription stopped fairly abruptly and had to taper that off over like a two week period. That is why I know how uncomfortable you likely were recently and what I hope to avoid again. I'm currently on a much higher dose of long acting opiods with the short acting meds for break through pain so hope to do it in a way with much less discomfort this time.

MT, I don't actually get up in the middle of the night now to take any meds since I'm on long acting meds so hopefully won't have to do that as part of reduction, do you think?

I have recently been having a heck of a time managing my constipation, even after having tried multiple remedies, and am fairly certain I have developed a rectocele (eww!). I have tons of stomach discomfort. This is one of the main reasons I need to see if I can either get by on less or get by without.

Thanks again,
SG

[Matuboo]

MT, I don't actually get up in the middle of the night now to take any meds since I'm on long acting meds so hopefully won't have to do that as part of reduction, do you think?



Thanks again,
SG


No, I wouldn't think so, not with the longer acting meds. If you ever have to go cold turkey or experience a drastic reduction you'll also notice that it takes a lot longer for WD's to kick in because the longer acting meds stay in your system for a while.

Sorry I couldn't be of more help but with the information I have and the fact that I was taking shorter acting (albiet a high dose) my taper would have been totally different.

[razzle51]

you need to see your Dr. about this . Do not get off pills on your own ?

[sallyb]

There use to be a man named Fred who was in the know about all of that. I am going to see if I can find him.

sally

[Superior Girl]

Thank you, Razzle.

As I stated above, will be doing that if I decide to make a permanent commitment to this.

Sally, if you could find this Fred, that'd be great!

Thanks again to all for the information I have been seeking, it has been most appreciated.

Superior Girl

[Quahog]

It would be nice if Fred would come back but I understand he has his reasons. I also understand that he uses/used a computer program to calculate some of his taper schedules. If he could share where he obtained the software or perhaps a link it would be most helpful to all invovled.

Anyways, here is a taper schedule that he did share with me awhile back.

"would suggest cutting by 1/4 tablet DAILY and the balance taken in no fewer than 6 relatively equal doses spread relatively evenly throughtrout the day and night. When you get down to 10 quarters per day, cut them in half to eigths and proceed down to 10 again at 1/8 per day. Then from 10 down to 8 leave 2 days between cuts, 8 down to 5, 3 days at that level and then finally at five, take 1/8 each 4hrs 45 minutes and then increase that interval by 15 minutes EACH DAY. When you get to 24 hours between doses you are done. Good luck,"

hope this can help

Glenn

[Tbackpain1]

Just a reminder, do NOT cut any long acting pills, as it eliminates the extended release mechanism and dumps the entire dose into your system at the time it is taken.

Theresa

[Quahog]

Yes Theresa is right. I do apologize for not making that clear. If you are on long acting medication you will need to switch to a short acting one in order to safely Taper using the method mentioned

Sorry for any confusion

[sallyb]

So far, I am batting zero at finding Fred. I have sent emails to some of my old forum friends, and haven't gotten any answers. Guess I only conversed with Fred by private message, rather than email.

But, I remembered a lady named Rose who also knew a great deal about B-12 which was one of Fred's areas of expertise...hoping that she also knew about tapers. Didn't forget. I'm still waiting.

sally

[sallyb]

I'm still looking for Fred, but have you tried Yahoo Answers?

[Matuboo]

I have known at least a dozen people in the last year or so that have tried desperately to get ahold of Fred and have failed, not to be negative but I think (and I hope I'm wrong) that the man is gone from BT for good. It's been a long time since he's posted, perhaps even 18 months. It would have been nice to have his formula or system for tapering but it could be that he had a life changing event and was not able to get back on line, who knows. Wherever he is I hope he's well.

Someone mentioned talking to your doctor or perhaps your pharmacist but the problem is most doctors and pharmacists don't really know how to properly taper. I'm sure there are some exceptions but the advice I got when I asked was horrible (and this was a smart doc)! Still, there are some out there who must know, perhaps a pain doctor or someone who deals with addiction, not that you have this issue but they would seemingly know how to ween off a drug or perhaps, they like the cold turkey method, don't know.:confused:

I tell you, I used to have tons of problems with constipation (while I was on opioids) and I started eating grapes, frozen or otherwise and lots of them. I would usually eat about a half a bag, every other night before bed and in time, it improved about 70 percent. Everyone is different though, diet does play a huge role and for some reason, grapes do the trick for me. Grapes and a lot of water, a quarter gallon per day until my motility improved. A little advice as I myself can only comment on my experiences. Obviously drinking too much water (gallons) can cause lots of problems! I usually eat them frozen as they taste better (to me) that way. Someone used to have a paste they made out of several different kinds of things, can't remember what it was, maybe someone already mentioned it on this thread.

[sallyb]

Would somebody explain WHY taper? I can understand if there has been a lessening in pain. But, why get off? I just am wondering if it is so that dose build up can begin again at a lower dose? Why?

sally

[krashleen]

I wish we still had access to the archives. Fred was a big proponent of vitamin b12 therapy. He used to post his email address in his posts. I don't know if a person could google "vitamin b12+braintalk forums" and see if something comes up?

I will give it a go..
I also want to reiterate what others have said about taper/withdrawal you NEED your doctor on board with this. Its dangerous otherwise.

Hang in there!

[Matuboo]

I wish we still had access to the archives. Fred was a big proponent of vitamin b12 therapy. He used to post his email address in his posts. I don't know if a person could google "vitamin b12+braintalk forums" and see if something comes up?

I will give it a go..
I also want to reiterate what others have said about taper/withdrawal you NEED your doctor on board with this. Its dangerous otherwise.

Hang in there!



I know B12 worked well for Fred but I'm wondering if anyone here has had any success with vitamins, have they cured or even helped your ailments or pain levels? I have tried everything and nothing has worked. Not to sound negative, perhaps someone could tell a success story!! Hope you all are well.

I also hope you were able to get something worked out, as far as a taper!

[RustyD]

I know B12 worked well for Fred but I'm wondering if anyone here has had any success with vitamins, have they cured or even helped your ailments or pain levels? I have tried everything and nothing has worked. Not to sound negative, perhaps someone could tell a success story!! Hope you all are well.

I also hope you were able to get something worked out, as far as a taper!

LOL.. DItto this.. I cannot begin to list all the vitamins and herbs I have tried. I was a sucker for success stories I guess.. But if it helps anyone.. Good for them!!

Sorry no Success Stories Here...

[leslieCA]

I just recently got off of my pain meds, didn't taper, and was miserable!!!!!!!!!!!!!!! I did not know tapering was necessary, and, after calling my PCP (who did not perscribe the drugs) did not give me a good taper schedule. Consequently, I went through depression and stomach distress. I was quite pathetic. I lost 10 pounds in 2 weeks, but after I was off the drugs completely for a week, the side effects stopped. I was happy again!! And kept the weight off.
I googled vicodin withdrawal, and found a site that suggested a 10% decrease per week. This reiterates what the last person who posted here has said.
Good luck with this, I really feel for you! I might suggest tapering a little on your own, and seeing if the pain is tolerable, and then continuing from there.
If you are not opposed to it, I also read that Xanax can help with the wd. And, others might critisize, but if you do not take too much xanax, you will not become addicted. Some think you replace one addiction with another, but we are not addicts, we are pain patients that rely on pain meds to manage our lives.
Keep us posted as to how you do, and I will send you good, positive thoughts and cyber ((((((((((((hugs))))))))))))))))).
You will always find support here.
Carolyn
One medication that my neurologist gave me when trying to stop Vicodin was actually a blood pressure medication, so it would have no potential for addiction. It is called clonopin and is used 3 or 4 times a day. It cleared the sweating totally and just make me more comfortable with no headache or upset stomach. Not easy to go through. Take it a day at a time and give yourself time to heal slowly.

[uvamomb]

I agree 100% with Razzle, see your doctor. From what I've been told, you can have seizures from getting off some too quickly and can even die. It's just not worth the risk. I'd be up front with him and let him know that you may have to go right back up to the levels you're at, but that you want to give it a try.

God bless and take care,
Kathy

[Matuboo]

One medication that my neurologist gave me when trying to stop Vicodin was actually a blood pressure medication, so it would have no potential for addiction. It is called clonopin and is used 3 or 4 times a day. It cleared the sweating totally and just make me more comfortable with no headache or upset stomach. Not easy to go through. Take it a day at a time and give yourself time to heal slowly.



Klonopin is actually a Benzodiazapine, in the same class as Valium, Xanax and Ativan. All the drugs are essentially the same but some are shorter acting (like Xanax) and some are longer acting, like the Klonopin. I've been on it myself for 3 years now for various neurological symptoms. It does work reasonably well for withdrawl but can be very addictive in and of itself. I think you may be thinking of another drug and it's on the tip of my tongue but I can't think of it, it's sometimes used for withdrawal and unlike Klonopin (or Clonopin) it does not have addiction potential. All Benzodiazapines do!

[sweetpea]

It's catapres (clonidine) . . .

Rgds,
sweetpea

[sweetpea]

Seizures are unlikely with opiate withdrawal. Seizures are, however, a possibility with benzo (tranquilizer) or barbiturate withdrawal.

Only way to die from opiate withdrawal is to (sorry for the unpretty picture) choke on your own vomit, if you start getting sick a lot. OR, perhaps if you have an additional, life-threatening condition (such as a serious heart problem) or uncontrolled high blood pressure it might be possible to trigger an event while going through the unpleasantness of withdrawal.

Rgds,
sweetpea